What is Multiple Sclerosis?
World MS Day is May 30th
There are nearly three million people worldwide living with Multiple Sclerosis, or MS. This chronic and often disabling disease comes into focus each year on May 30, World MS Day.
One of those people is Veronica Gogan, a mother, paralympic hopeful and Pride Mobility scooter user, who has lived with relapsing-remitting multiple sclerosis for 17 years. Seventeen is also how old Veronica was when an MRI revealed lesions on her brain and spinal cord. For World MS Day, we’re exploring Multiple Sclerosis, Veronica’s journey with para dressage and how mobility scooters or power chairs can be right for people with MS.
MS affects the central nervous system (CNS), which includes the brain, spinal cord and optic nerve.
“Within the CNS, the immune system causes inflammation that damages myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves, and the specialized cells that make myelin,” explains the National MS Society (NMSS).
MS alters or stops messages within the CNS, resulting in a host of neurological symptoms that vary in frequency and severity. Common symptoms include fatigue, weakness, vision problems and numbness or tingling. Click here for a complete list of symptoms from the NMSS.
A patient’s experience with MS is greatly shaped by what course of the disease they have. There are four courses.
- Relapsing-remitting MS (RRMS)
RRMS is characterised by cycles of new attacks of neurologic symptoms followed by complete or partial remission. About 85 percent of people with MS were initially diagnosed with RRMS.
- Clinically Isolated Syndrome (CIS)
CIS is an initial onset of neurologic symptoms caused by inflammation and demyelination of the CNS. By definition, symptoms must last 24 hours. A CIS episode does not mean an MS diagnosis is forthcoming. If the symptoms are accompanied by an MRI showing lesions of the brain, there is a higher chance of an RRMS diagnosis. Conversely, if there are no MS-like lesions on an MRI, a diagnosis is less likely.
- Secondary progressive MS (SPMS)
SPMS is marked by a progressive worsening of neurological function that follows a relapsing-remitting course. Some patients that are initially diagnosed with RRMS may transition to a SPMS course.
- Primary Progressive MS (PPMS)
PPMS is characterized by progressively worsening symptoms from the onset.
Each course of MS varies by person. There are also modifiers, such as “active” and “non-active” as well as with or without “progression.” Further understanding these distinctions can help patients and their health care providers speak the same language. This ultimately leads to more meaningful conversations and a better grasp of the disease.
Living and riding with MS
“I am Veronica Gogan and I am afflicted with two chronic diseases: multiple sclerosis and a lifelong love of horses,” Veronica writes to her online followers. “Fortunately, the second helps me to manage the first.”
From a young age, Veronica had her sights set on professional riding. Since her 2004 diagnosis, riding became increasingly challenging and dangerous. By 2013, a serious fall changed Veronica’s perspective. She believed her riding career was over. But five years later, Veronica found therapeutic riding and soon converted to para dressage.
Dressage is a discipline of riding in which the horse is scored on a variety of movements. The resulting performance looks as though the horse is gracefully dancing. Para dressage allows athletes with an eligible physical impairment to compete against each other.
While still relatively new to para dressage, Veronica has dreams of international competition. In March 2021, she started riding Mason, the “new principal of their dance company.” Veronica has been chronicling the trial-and-error nature of their partnership on her blog.
When not riding Mason, Veronica uses her Victory 9.2 Pride mobility scooter. “New Nimbus,” a reference to Harry Potter’s broomstick, is her second Victory scooter. The four-wheel Victory moves flawlessly into rings and barns.
Veronica also uses the scooter to safely move around Mason, and to halter and bridle him. Well-timed cookies have helped the food-motivated Mason get used to Veronica’s added equipment. Other horses have come to embrace the rolling “cookie cart” in the barn.
You can learn more about Veronica’s life with MS and as a Pride Mobility rider, in her Profile in Motion.
Symptoms like muscle weakness, fatigue, poor coordination and numbness in the feet or legs may require patients to use mobility aids. Mobility devices range from crutches and walkers to scooters and power wheelchairs. Needs can often change over time, and they are different from person to person.
NMSS compiled a thorough brochure called, “How to Choose the Mobility Device that is Right for You” that can help people decide what device or combination of devices will work best for them.
Pride Mobility offers a full line of scooters to fit various needs. A good candidate for a mobility scooter has good core control while sitting and can navigate a chair independently. Additionally, scooter users need to have solid upper arm control so they can operate the tiller.
If riding a scooter is uncomfortable or physically taxing, a Pride Mobility power wheelchair may be a solution. Power wheelchairs come in different models and levels of complexity, but most often they are driven with a joystick. Power wheelchairs are often right for people who experience too much fatigue or have greater injury risk from operating a manual wheelchair.
This is general advice. Anyone considering a mobility scooter or power chair should talk with their physician and mobility device provider.
The National Multiple Sclerosis Society, which is currently celebrating 75 years of progress, is an excellent resource for patients, caregivers and family. The national organization provides education and support for those who need it.
They also have an extensive local network of chapters around the country. You can check out our list of chapters by state, here.